Will We Ever Get One Without The Other? |

Will We Ever Get One Without The Other?

Posted by Melissa | Filed under Gaucher Disease, Thoughts From Mom, Treatment

I swear that since Kyle’s medical issues began last October, there has never been a good thing without a bad.

As mentioned earlier today, Kyle received his first Cerezyme treatment yesterday and it was such a good thing. I am so happy that he is finally getting the medication his body so desperately needs to begin healing the physical symptoms of this disease (except, sadly, his neuro issues), but, of course, with this good moment we got a bad one.

One of Kyle’s doctors stopped by during treatment to speak with me and see how Kyle was doing. Unfortunately, she gave me the bad news that none of us, his brother included, is a bone marrow match for him. My heart broke even more…before long, I’m not going to have heart left…

If there’s good news, there’s bad…at least that’s what it feels like. And you know, now that we know our other son is not a match for Kyle, we’re not so sure we want to go through with the transplant. Kyle’s best chance was through a sibling donor because it lowered the risk of rejection, but now that this isn’t going to happen, I’m having doubts.

We were ready to take this huge medical leap and put Kyle’s life into the hands of doctors to let them do a very risky procedure, all without a guarantee that this was going to do anything for his disease.

They can’t tell us that by doing the transplant that it will put a stop to, or reverse his neurological effects (which at this point is just his rapid eye movement, or lack of), in fact, they can’t really promise anything.

But because we were so hopeful that Kyle’s brother would be a match for him, we were willing to take that chance because we believed that giving him back a healthy genetic make-up that is as close to his current DNA as possible, was his best shot.

Or course, a sibling match just couldn’t happen for us could it? Why not pile another crappy thing onto the pile of crappy things Kyle and this family has been subjected to for the last 7 months?

Why the hell can’t something go our way for a change? Why do we have to give back our baby when we just got him?

I’m terrified that we’ll do the transplant and he won’t make it. That we’ll lose him long before we have to.

Because maybe we don’t have to lose him at all. With all the research being done, maybe a treatment or cure will come sooner then expected and Kyle will be saved. Maybe he’ll be the kid who lives well into adulthood, enough time for them to find a cure.

Considering Dr. Oz was on Oprah (with Michael J. Fox as a guest) a couple of months ago saying that they WILL be able to use stem cells to cure diseases like Parkinsons by injecting the stem cells directly into the brain where it’s needed. And get this, he said this will happen in less then 10 years…so I mean, 2 years from now this could be a reality.

But that’s the thing, we just don’t know. We don’t know, no one knows what will happen in the next few years. No one knows how fast Kyle’s disease will progress, no one knows how long Kyle has left – though they gave him 10 years at most with enzyme replacement therapy – nobody knows a damn thing and that’s the worst thing of all.

Not knowing…

7 Responses to “Will We Ever Get One Without The Other?”

Ann Says:
May 15th, 2009 at 8:26 am

Melissa

I can’t even begin to understand or know what you are going through right now. My heart breaks for you and Kyle and the rest of the family. I really felt that Jason would be a match and everything would work out just fine. And that’s not to say it won’t, it just might be a different route then you were planning. If you decide to go ahead with the transplant, like i said before i would get tested in a second if it can help save Kyle. Please know you guys are in my thoughts and prayers and if there’s ever anything i can do, please don’t hesitate.
Bonnie Says:
May 15th, 2009 at 9:48 am

Hi Lis,
I just read your post and was in tears. I dido Ann’s comment. Even though Jason was not a match, there is still one out there. And yes, please let us know where and how we go about getting tested. I can’t imagine your pain and suffering and no one should have to go through that. Try to stay strong and remember that your children will always be in your heart, keeping it in one piece. Know that we are all praying for you and your family.
Carrie Says:
May 16th, 2009 at 12:54 am

Hey, you know I’m here for you too. I do understand your feelings — it would be one thing if a BMT was a definite treatment for GD3, but it is just so unknown at this point. You are a very strong and intelligent mom — you will do what you think is best for Kyle…

{{hugs}}

Carrie’s last blog post..Denial? Reality? What do I say to strangers?
Patti Says:
May 17th, 2009 at 2:03 pm

If only life was as easy as cutting a piece of pie.If i could give my life for Kyle to have a healthy life i would in a minute i would do it for all my grand kids or my kids.I’m not afraid to go early if it meant to save a life of one of my own.If we need to be tested please let us know and it’s done.I love you guys with all my heart
Mom
Kelly McCausey Says:
May 18th, 2009 at 11:14 pm

I am so sorry to hear this news Melissa. I can’t imagine what you and your hubby are going through.

I’m continuing to pray for your baby.
Nell Says:
May 19th, 2009 at 11:23 pm

I’m at a loss for words. I wish I had something comforting … I’m just so deeply sad for you.

Nell

Nell’s last blog post..Stuff
Mary Pruitt Says:
May 27th, 2009 at 10:29 pm

Hey, I just found your website and read about none of you being a match for your son’s BMT. My son has Wolman’s Disease, another very rare storage disease, that has similar symptoms to Gaucher’s. They cannot do ERT for Wolman’s but 3 children have been cured with a stem cell transplant. We were not matches and neither was his sister, so they found us a PERFECT umbilical cord match. It was actually a 10 out of 10 match! 75 days later, his liver and spleen are so much smaller and softer and we are hoping that his test result will come back that he had the enzyme he was missing. Anyway, my point is, (not giving advice, I promise) since you cannot do a family BMT, are they considering cord blood? I truly wish the best for your family, Mary

Mary Pruitt’s last blog post..Tuesday